Join the Conversation

Cancer survivor touts ‘right to try’

Christopher Behnan, cbehnan@lsj.com
10:50 p.m. EDT August 23, 2014

Mark Howell and his wife Christina Howell talk about how they’ve dealt with the medical procedures to stave off a form of melanoma Mark is afflicted with.
(Photo:
GILLIS BENEDICT/DAILY PRESS & ARGUS FILE PHOTO
)

“That’s definitely an option that I could have had that I really didn’t have at the time. For me, especially, that would have kept another door open,” said Howell, who is being treated for stage 4 melanoma.

“There’s so many different rules and regulations for who is eligible,” he added.

The Legislature is considering a bill that would provide legal protections to pharmaceutical companies and physicians who provide unapproved drugs in Michigan. To qualify, a drug in question would have to complete an initial medical trial.

A challenging year

“Right to try,” in concept, could untangle a complicated web of bureaucracy to access experimental drugs, Howell said.

His journey made headlines in October, when the congressional shutdown temporarily short-circuited his plans for a federally funded treatment program that has up to a 70 percent success rate.

Howell was eventually approved for screening at the National Cancer Institute, part of the National Institutes of Health, after a local support effort.

Howell was awaiting word from the NCI when he learned its admissions system closed because of the shutdown.

He later participated in a chemotherapy medical trial through the University of Michigan. Tumors that first shrunk about 40 percent through chemotherapy eventually grew back.

This spring, he was enrolled in a trial of a drug treatment known as PD1, a treatment that strengthens the immune system to allow it to kill cancer cells.

The PD1 treatment made the most difference, recently resulting in as much as a 400 percent reduction of his two major tumors.

The treatment was a Phase 4 trial when Howell first applied for it. The classification means it has the most limited access on the federal government’s four-phase scale.

PD1 was later approved for “compassionate use,” which allows physicians to administer the drug in potentially lifesaving situations.

While he has shown dramatic improvement, Howell said he would have gained peace of mind with access to PD1 a year earlier.

“How many people are faced with similar situations and frankly don’t have some of the luck that I’ve had? A lot of other people are left out to dry,” Howell said.

Legislative action

The state Senate approved Senate Bill 991 this month, and it could be considered in the House as early as this week.

It would not require medical coverage of unapproved drugs.

It received bipartisan support and little, if any, public protest.

Critics elsewhere have challenged the safety of the concept, however.

A potential fallback of the bill is that it can’t overrule FDA rules because the Legislature can only change state law.

Michigan is about the fourth state to pass “right to try,” however, which is drawing growing attention to the issue, said bill sponsor Sen. John Pappageorge, R-Troy.

Pappageorge said it’s only a matter of time before Congress enacts a nationwide “right to try” law. The World Health Organization recently adopted the policy to treat Ebola patients in Africa.

Pappageorge’s wife died in 1993 after a battle with pancreatic cancer. He said they would have considered any treatment option available in her final days.

“We tried everything we could, and had there been something like ‘right to try,’ we would have done that, too. When you’re in that situation, to have somebody say, ‘We don’t know if this is safe or not,’ is silly,” he said.